INTERNATIONAL 22q11.2 FOUNDATION INC

Detect.Know.Grow

aka The International 22q11.2 Foundation, Inc.   |   Matawan, NJ   |  www.22q.org

Mission

"Improving the quality of life for individuals affected by the 22q11.2  syndromes through family and professional partnerships" The International 22q11.2 Foundation is working to empower and support families. We are campaigning for early detection and newborn screening. We are dedicated to spreading awareness. Through community events such as our annual 22q at the Zoo, Worldwide Awareness Day, 22k for 22q events around the globe, and our Same Name Campaign we are bringing much needed public attention to 22q11.2 syndromes. We provide support through our global Family Support Network, professional connections, guidance and resources. We sponsor family and professional educational conferences so that familie share the most up to date research available.

Ruling year info

2004

Chair

Marc Weinberg

Co- Chair

Missy DiSibio

Main address

PO Box 532

Matawan, NJ 07747 USA

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EIN

36-4540878

NTEE code info

Single Organization Support (G11)

Single Organization Support (G11)

Single Organization Support (G11)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

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Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

22q at the Zoo Worldwide Awareness Day

22q at the Zoo – Worldwide Awareness Day® launched for the first time on May 22, 2011. It was originally planned as a Philadelphia (USA) event to promote friend raising and awareness. Thanks to families, professionals and other support organizations around the globe this “local” function morphed into a worldwide phenomenon where people gathered at their closet zoo for a day of fun and solidarity sporting our unique 22q at the Zoo T-shirts. While adults socialize, children enjoy the animals, face painting, music, dancing, parades, and craft activities. During all of this fun, teams of volunteers distribute fact sheets informing the lay public about 22q11.2 Deletion and Duplication Syndromes.
Since our initial inception, additional locations from all around the globe have joined in the annual fun. In 2019 a record 115 cities celebrated our Worldwide Awareness Day posting photos from Down Under to the South Pacific and everywhere in between.

Population(s) Served

Where we work

Videos

Our Sustainable Development Goals

SOURCE: Self-reported by organization

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Financials

INTERNATIONAL 22q11.2 FOUNDATION INC
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Operations

The people, governance practices, and partners that make the organization tick.

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INTERNATIONAL 22q11.2 FOUNDATION INC

Board of directors
as of 11/25/2022
SOURCE: Self-reported by organization
Board co-chair

Mr. Marc Weinberg


Board co-chair

Mrs. Missy DiSibio

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? No
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? No
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? No
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? No
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No